One result of life with an IBD – less sympathy, more empathy

Before I ever heard the phrases ulcerative colitis or inflammatory bowel disease, I had a mantra that I would refer back to whenever I felt as though my life was rough: “Starving kids in Africa.”

That mantra was, and still is, a sweeping overgeneralization of life on a continent comprised of 53 nations, no two of which are the same. As such, I retroactively apologize to African people for using a stereotype as a tool to alleviate my disappointments.

Perhaps it was leftover teenaged angst, but in my early twenties, I often felt as though my life was rather shit. During those low moments, I’d remind myself that even though I was in the midst of a mediocre existence, there were millions of people on this planet who had nothing, and likely never would.

Have to work odd hours? Starving kids in Africa.

No girlfriend? Starving kids in Africa.

Not rich and famous? Starving kids in Africa.

I still had a job, and an apartment, and food in the fridge. How could I be upset with my life when there were destitute human beings, many of them merely children, wasting away on dusty expanses of scorched earth?

My mantra never made me feel better, in the sense that it never made me feel happy. In fact, it made me feel worse because it forced me to awaken to the reality that for so many people, life is hopeless and agonizing and wretched, and there’s precious little that I could do to make things better. But that awakening shook me out of my sadness; largely by injecting a dose of guilt that convinced me I had absolutely no right to feel upset. How dare I complain when others have it worse? So much worse. And not just kids. And not just in Africa.

I used my silly saying even after I was diagnosed with UC, while fighting the flare-ups. Even though I was running to the bathroom 30 times a day, even when I was bleeding from my rectum, even when I was soiling my pants, I’d remind myself that somehow, in a sign of how horrible life on this planet can be, I was still better off than many people. It’s that line of thinking that kept me from complaining about my condition to other people. Even though I patronizingly referred to the downtrodden as “starving kids in Africa,” I still felt sympathy towards people who have a real rough go of it.

My first operation dealt a blow to my capacity for feeling sympathy. My colectomy in May of 2013 came with a series of complications that left me in many ways worse off than I ever was with UC. My poorly-constructed ostomy caused a daily burning of its surrounding skin, lodged awkwardly in my left buttock was a drainage tube, and strapped to my thigh was a plastic bag that collected the foul-smelling fluids of an abscess. Showering was hard. Dressing myself was hard. Going for a walk was hard. Sitting down was hard. Lying down was hard. Full-time work was out of the question. Running was virtually impossible. And what made it all worse was that for months I had more setbacks than signs of progress.

In that time, whenever I thought of someone worse off than myself, I shrugged it off. So what if there were homeless people? So what if there were needy children? So what if there were refugees? So the fuck what? I was in the worst condition I had ever been in, and my life was garbage. Sure other people may technically have had it worse, but my life was nothing to covet.

As my condition gradually improved, my ability to sympathize began to recover. On the day I had my drainage tube removed, I felt, dare I say, good. I left the hospital that afternoon and went for a long walk around downtown Toronto. I dropped a $5 bill in the black, beaten up baseball cap that a homeless man held out while asking for change.

I had my second operation in February 2014, this one to reverse the ostomy and get my J-pouch running. The ensuing recovery has had its setbacks and successes, and as a result, I still don’t express sympathy as easily as I used to. I know life without a colon from here on out is always going to present difficulties. Difficulties that I’ll never be able to shake. That’s a hard reality to confront every day, and one that makes me feel little sympathy for people who complain about bad coworkers or bad boyfriends or bad bus service or bad weather or bad colds. Suck it up.

Having to endure a number of trying events, it makes it hard to feel sympathy for people when they moan about petty things. It even takes a toll on one’s ability to show compassion for those who have big, pressing problems. It’s only after navigating to calmer waters that the capacity to sympathize can grow again.

It’s a different story when it comes to empathy, at least for me. While both sympathy and empathy are feelings of compassion, empathy is marked by compassion from the perspective of someone who’s been there. To that end, my experiences with UC and surgery and an ostomy and now a J-pouch have let me empathize much more with others who have similar health issues.

When I read posts written by other IBDers in the midst of their own challenges, I feel a connection with them, and I want to do something to make them feel better. I’ll leave short notes of encouragement or well-wishes, just to let them know someone else gets how shitty things are, and that same someone else really wants them to find better days.

Sometimes I find myself feeling empathy at unexpected times. On the bus to work one morning, an old woman stepped on and took a seat across the aisle from me. She reeked of urine. My first thought was not to feel repulsed or change seats. My first thought was about my old drainage tube and collection bag, both of which emitted a nasty odour. I remembered how I felt in public when I could smell the odour emanating from my fucked up body – scared, embarrassed, frustrated, sad. I imagined the woman might feel the same way. I imagined she had a medical condition that required surgery and a rejigging of her internal organs. Maybe she had to wear adult diapers, like I have at various points both before and after surgery, and they weren’t containing the odour as they should. I didn’t say anything. I didn’t do anything. I just sat where I was and read my copy of Alan Weisman’s Countdown. I hoped that by behaving as though nothing was amiss, she might feel even a little less self-conscious. It was a silent expression of empathy.

For those of us with Crohn’s disease or ulcerative colitis, I think the ability to empathize with other IBDers comes easily. We want to make ourselves better, of course, but we want to make others with our conditions better as well, because we know damn well the severity of the diseases. And if we can’t medically heal others, we want to at least offer them our support.

I’m grateful for the kindness that other IBD patients have shown me over the years; the sort of kindness that’s rooted in truly understanding another’s plight. As a community, I’m confident that IBDers will keep expressing our hard-earned empathy to one another, not only at this festive time of the year, but any time it’s needed. As for my ability to sympathize with others, I hope it will grow as conditions around and within me improve. Just don’t bitch to me about a stuffy nose.

My Book

Three Tablets Twice Daily is a collection of short stories about living with ulcerative colitis. You can pick up a copy from Life Rattle Press or Amazon.ca . Proceeds from book sales benefit the Crohn's and Colitis Foundation of Canada.